The draft Data Protection Regulation (DPR), as it has been amended by the European Parliament, would seriously impair Europe’s competitiveness in medical research and innovation, which in turn will have a negative impact on health and wellness in the population.
The right to privacy and the consequent need for data protection is an aspiration of the great majority of people living in Europe. The draft Data Protection Regulation (DPR) is designed to provide the legislative framework for protecting peoples’ right to privacy and generally it does a very good job.
However, there is another right to which a great majority of citizens aspire.
[Tweet “The right to a healthy life, which implies the right of access to the best possible medical care”]
Excellent medical care is impossible without excellent medical research, which provides the new diagnostic instruments, drugs and other measures for keeping people healthy.
Balancing these two rights is critical if we are to protect individuals’ data, while avoiding harmful unintended consequences for research. As a practicing doctor and active medical researcher I believe there is a danger of that happening if the Parliament’s amendments to the DPR are adopted.
Medical research has increased the average European life span from around 40 to over 80 years in the 20th century. It has eliminated polio with vaccination; turned AIDS into a non-fatal disease; protected young women from cervical cancer; and cured stomach ulcers with antibiotics, eliminating the need for surgery.
The list is enormous. Medicine has also provided much employment in Europe in the last century.
Effective medical research requires a large number of different types of data, from varied sources, ranging from laboratories to hospitals to census information or medical records. Epidemiological and association studies often require very large data sets, based on information from thousands of people, to get the answers we need for disease prevention and to maintain “wellness”.
There is a tried and tested system for protecting the privacy of individuals. It is based primarily on local ethics committees that include lay representation and which work to an international standard expressed in the Helsinki Declaration.
In addition, peer review guarantees scientific validity and medical importance and eliminates unnecessary experimentation, or experimentation that cannot achieve a result to the question posed. This culture includes developing new methods to protect data, which are refined as science and technology progress.
Europeans view their health as being as important as their right to privacy. In a Eurobarometer survey from 2014, 40 per cent of respondents said that “treatments that work” are one of their criteria for high quality healthcare.
[Tweet “Health research is essential for discovering and testing better treatments”]
In Europe’s socialised health systems, the vast majority of people contribute to funding health care through taxes. Data collected during the care of an individual clearly belong to that individual.
But perhaps we should consider whether every citizen who pays for the health system also has a right for this rich information to be shared – safely and securely – to improve the health and wellbeing for all of us.
At present, the legal framework and the culture of safety in medical research respects the balance between the right to privacy and the right to health. That important balance will be maintained if the final version of the Regulation retains the substance of the medical research exceptions proposed in the initial Commission draft.
I believe that the adoption of the Parliament’s amendments to the Regulation would seriously impair medical research by preventing some studies and creating ambiguous rules and unwieldy, bureaucratic processes for others.
Europe’s competitiveness in medical research and innovation will be blunted, impacting negatively on opportunities for job and wealth creation, which in turn will have a negative impact on health and wellness in the population. This is a vicious circle that must be avoided.
This post was originally published on the website of the European Data in Health Research Alliance (www.datasaveslives.eu / @datamattersEU)